I have stage IV breast cancer which was a metastisis from the bc I had in 1993. I had a lumpectomy, chemo and radiation back then and was cancer free until this new one was discovered on March 13, 2008 (get out your violins girls) when a suspicious node was checked while I was having a four-way bypass and heart valve replacement. Now, the cancer is peritoneal and rectal. I was told it's incurable and inoperable, but can be slowed by treatment. I had nine doses of Taxol ending on Dec. 29, 2008.

Lost my hair, developed joint and nerve pain and extreme exhaustion and depression after about week six, but finished up and I've been on Femara since Dec. 30th.

My stamina is better now, the depression is much improved (most of the time, haha) and I can walk a mile or more to get back some semblance of strength, but the Femara seems to have just made the bone and nerve pain worse, plus muscle pain now. It can get really miserable at times, especially at night. Hard to get to sleep. My hips and outer upper arms are very painful and it hurts if I accidently turn on my side in bed.Some nights are pretty much sleepless.

I notice it all seems better when I eat well (and stay away from sugar) and remember to take my vitamin supplements. I have not tried glucosamine/condroitin, but am interested. I am also interested in trying melatonin for better sleep.

Currently, since the cancer has caused extreme constipation, I take a liquid calcium/magnesium/D3 at bedtime. It works very well to help me have a bm each day. If I don't take it, no bm.

Probably the best thing I have going for me is my sense of humor, which can get wacky and/or pretty macabre at times...but it lightens my mood and helps me cope. I don't think I am using it to avoid, believe me, I know very well what I have to deal with.

Anyway, I have mostly read about Arimidex on this site, which, by the way, was given to me first before I had the chemo, but it didn't work fast enough. So, I wonder if there are many on this site taking Femara, which is usually given to us older ladies.

Any interest in adding this as a topic within the Older Women with BC forum?

Hi Joanne...So sorry to hear about the return of this dang BC. UGH I am on Femara and agree with you, it has caused some pretty bad SE of joint pain. I feel 80. I'm 61. It has also thrown me back into menopausal symptoms..ie flushing, BAD night sweats and anxiety attacks. So lovely, NOT. I've only been on it since Jan1st of this year.

I have a question for you tho, when you were 1st dx back in 1993, after your surgery and the chemo and rads, did you take anything such as Tamoxifen? I know there is no absolute guarantee for this bc not returning on us, treatments and/or drugs aside, but i'm having a real hard time justifying taking Femara and coping with all its SE and still face the prospect of reoccurance.

Going back some..I was 1st dx last August of 2008, had a lumpectomy, (it was really little - only .8 cm..clear margins, and no node involvement. I had 36 treatments with rads which ended in Dec and then put on Femara...

I sometimes feel like I have had the 'bums rush' in that..wham bam, surgery, rads, medication..OK you're good to go...now go live your life! Ya Right!!! When you're 1st dx, you are in such a dither, and you definately DO NOT know all the right questions to ask, you just want this thing outa you and be better...BUT..its only after all that do you have the sense to question things, hear and read about ALL the SE's and such..and now I'm questioning whether taking this drug will truely help or if it's just a long term 'experiment' of the pharmas and the drs. have accepted all their information re: Femara and we're just their guinea pigs....

Oh I know, we should probably be happy there is something out there that says it can give you 15+ more years BUT my question is, will we just end up getting this crap back again and again, no matter what we do??? I know no one has that crystal ball YET, its just hard to take this drug daily when you get all these se's that really affect your quality of life.

I'm sorry I havent been able to give you much positive feedback re: Femara..but from what I've read here on these boards, it's pretty much the same with all who take this.

I also know that it is OUR decision to take this drug or not take it. BUT, its the 'fear factor' that keeps us taking it. The what ifs...do we throw the dice and take our chances without it? or do we give in and take this drug and HOPE for no more BC???? Its a tough one!

I'd appreciate your feedback and of course all others who might be on this also.

I have been on Femara for the past 6 months with virtually no side effects so I am one of the lucky ones oh yes I do get the occasional twinge and twang and to be honest when that happens I think to myself uh oh is it starting. I said on another post that when I put that first one in my mouth it felt like I was putting a gun in my mouth I was so scared. I don't know if we are guinea pigs but I am willing to do it. I sometimes have trouble sleeping and spend half the night throwing off covers and putting them back on (hope there isn't an earthquake cause sometimes the nightgown comes off as well - my poor neighbors if that should happen!!!) because of our weather here in So Cal this past week I have had a lot al allergies and so I have been taking a Benadryl at night and I have been sleeping like a top, someone else said that Calms Forte helps for sleep i was going to get some of that to try. Keep putting one foot in front of the other, it's better that the alternative - of yes I have one of those sense of humors as well, some people get it some don't - Big HUG to you.

I've been taking Femara almost three years now, and have a few side effects, but nothing like alot of the other ladies have had....really bad pain, really bad hot flashes. I did take glucosmamine/chondrontin in the beginning, but quit for whatever reason. I try and keep regular with exercises, and that keeps the knees and hips from bothering me too much. Hair's a bit thinner, hips're a bit wider, but hey....I'm getting older so how much is from the drug, and how much is just me ageing? Stil have moderate hot flashes at night, and the cover flops back and forth, but the alternative scares me more, so I continue to take it....even if the bones turn to dust.

Sorry I haven't been on here for awhile, but I appreciate your replies. First off, let me say that when I was treated back in '93, I was not a candidate for Tamoxifen. My cancer was not hormone receptive, so I had the chemo and radiation.

Well, today I had my results appointment after last week's CT scan. Not the greatest news. The cancer has grown a little. It had been reduced a little after the last chemo that ended in December, but now...

So, back on chemo starting next Wednesday or so. I'm pretty sure it's Taxotere once a month for four months, for now. Then see what happens again.

I was really a nervous wreck since the test and was shaky today at the doc's. I pretty much knew it wouldn't be the best news. But, I have to say I am much better now (after taking a magical Xanax...love those things!) haha!

Seriously, I have to just take it one day at a time. I know I'm not dying today or tomorrow, so don't count me out. Another cancer friend says that and now I've adopted it as my mantra...Don't count me out!

As for the fear when we have to take these dratted meds...I'm scared of them, too. But, I guess I'm more afraid of NOT taking them I guess. With the Femara...I don't seem to get hot flashes much, just occasionally.

Hi Again....I know my oncologist dr. is probably going to bop my on the head next week when I tell him what I've done....I stopped taking the Femara 2 weeks ago. I just had to find out for myself IF the symptoms I was experiencing were truely connected to this drug OR if I was just imagining them or IF they were related to just getting older. So after two weeks OMG I feel almost like my old self again. NO foot/ankle pains and my right hand is able to move again without major pains and I sleep sooo much better with no night sweats and/or cold chills waking me up 3 or 4 times a night. But most of all my mood has improved greatly - not experiencing nasty PMS symptoms. So in other words, I don't feel 80 anymore instead of 60. When I see the dr. next Wednesday I'm going to ask him to 'convince' me why this drug will help ME...not just give me the 'general' hogwash they give us all about the stats, etc etc. Maybe I'm asking for more than they can give, but at least this will help me come to a MAJOR decision as to start taking Femara again, or not.

So, here's another chapter in this lovely saga we're all going through...I'll let you know what the next chapter brings.

Geez, Cheryl, you are so brave to stop the pills. I don't know if I would be brave enough. But, after what I wrote in my first post above, my pain had lessened, so maybe I'm not desperate and in pain enough. Ack!. I think it was the supplements helping (building up in my system). I take calcium/magnesium/D3 in a pretty high dose and my regular multis. Enzymes help with the stomach issues. The cal/mag/D3 mix helps me sleep most nights, but I'm retired, so I just sleep when I can and try not to worry too much when I can't.

Actually, I've been really tired lately. Don't know if it's the Femara or the cancer...or both.

You post sure sounds like one I could have written. I'm 71 and was diognosed last Sept. Had a lumpectomy 24 Oct and 35 Rads. Now I'm on Femara. Lots of stiffness in my back and thighs. Don't know if it's the Femara or not. I feel we're being experimented on. My onclogist says Femera reduses my chance of recurrance 50% but after reading Susan Love MD's website it really means a drop from 5% to 2 1/2 %. Is that worth the side effects. I already have osteoporosis and high cholesterol. Anxious to hear what your doc says when you tell him you've quit the Femara

Hi everyone. Well went into the oncologist and told him all the SE I was having and just how bad it was making me feel. He told me that taking the Femara was just an "Extra insurance policy" but given the fact that my tumor was so small and being Stage 1 and no nodes and being discovered so early..he felt that I could stop taking it. Some people he said, just can not tolerate the SE's. He also said he would NOT say this to me, if he truely didn't feel like the benefit of taking it vs. not taking it, didn't amount to that big of difference in reoccurance rate...FOR ME. He does want to see me every 3 mos and do blood draws to see if I keep doing well and if not, well then we can discuss any alternatives.

I feel so happy that he was so honest with me and didnt have the 'one size fits all' attitude. I am, however, a bit hesitant to tell my story because I do NOT want to have any other dear person here on these boards feel like they can stop taking their meds WITHOUT talking 1st to their doctor and discussing it all in full with them. As I sure you all know, we are all soo different in our journeys with this BC, that what is good for one, may not necessarily be good for another.

This is a decision that I have come to after much soul searching and much reading and study re: the meds we are given. Who knows if it is the right decision, but it is one that I have come to and am willing to live with.

I think when we are 1st dx with this BC we are in such a dither and our minds are realing..that it is hard to sit down and have a good ole discussion with our doctors...because, hey this is a subject that none of us ever cared to know about - that is UNTIL it hit us.! It takes a while to wrap your brain around the idea of what has happened and what lies ahead of us.

So I guess what I am suggesting, is that you get to know as much as you can about these drugs and write down your questions and concerns and then face your doctor with all of them and have a good ole talk with him/her and then you can make the decision as to what is the best route for YOU in this journey.

Hoping and praying we ALL can find a cure for this someday SOON. Cheryl

Hi Cheryl, What a wonderful post you sent. Your doc is so different from the med oncologists I've dealt with. The first one, which I dropped, actually started yelling at me when I expressed reservations about AIs. The one I see now keeps pushing the misleading 50% thing. My tumor was tiny, the margins were clear and no nodes were involved. I'll stay with the femara for the summer and see how I feel but I have deep concerns about it. I'm one of the gals in the Womans' Health Initiative. They have asked my permission to get all records regarding my treatment which I gave willingly. I told them I wish they'd start a study on breast cancer treatment as they don't have an ax to grind. Heavens knows one is badly needed. Be well

I was diagnosed with stage IV last year and take Femara but my curiousity was peaked regarding the calcium/mag/Vit D supplement you take. What is the brand name and how much do you take.I need something for constipation and also need to take calcium. I heard magnesium helps constipation and calcium causes it!

Wishing you the best in your journey...I too am an older gal 65 but happy to be any age.

Hi Linda...I just take an over the counter Calcium/Vit D....Natures Choice i think. Anyway the dr. said most anyone you get at the store is fine as long as it is Vit D 3...Also he wants me to take 2000mg a day. It is a soft gel and this makes it so much easier to swallow. As for the constipation problem...which i dont have..but i also take Fish Oil capsule daily, which i hear, takes care of any problems with constipation...any, works for me! hahaha

I've just joined the chat room, wanting to see responses from women with BC on taking the drug Femara. I will be 72 in 2 months, was dx with BC in Sept.2008, early stage, nodes clear and had a Lumpectomy in Oct. and 28 treatments of Radiation ending in January 2009.

Femara was the drug that was recommended, also Tamoxifin. I had concerns after the rad. as to taking Femara with all the SE and we all know all bodies respond differently to meds. My main concern was the lapse in time in making up my mind which to take. My Oncologist told me I had a year from my surgery to decide, therefore I have not been pressured. It has been 8 months since surgery and am now feeling like my old self. Radiation does have side effects, regardless of what they say.

During that period I have read more articles on BC and AI wanting to know more about what will go into the body...and its effects. On my last visit with the O, I had many questions to ask and all were answered with facts I needed to hear. I am probably at this point 99.9% sure that I will not go on Femara or any drug therapy and a lot of thought has gone into my decision.

I was happy to read your response on SE and that your O had told you to stop taking the drug. Good luck and I hope you get to feeling like your old self again, soon. At this stage in our lives I figure what the H...Life has always been a challenge, let's give it another shot....

I also had breast cancer. Found in Sept 08, Lumpectomy in Nov 08, Chemo and then Radiation. I did not think I could feel any worse, then they put me on Femara. The constant, non stop hot sweats, crying and the on my gosh the "I just want to die" pain. Arms and legs with "pins and needle" sensations, squat down to get something and not be able to stand again without help. I'm 51 years old....I feel like 100. I had only been on the drug one month and I stopped taking it last week. Only 5 days off it and I am already feeling better. I went to my Oncologist before stopping, crying my eyes out and begging for some help. She wrote me a script for 120 Vicadin and 5 refills....are you kidding? So I have not told her that I stopped taking the drug, but if I had to decide my fate based on quality of life....I'll take my chances. I had stage III and 6 of 10 lymph nodes were positive. She told be that I can say I am cancer free at this time, so that being the case I am staying off that awlful drug.

I am new here, but I was diagnosed with bc in Feb./97 (one month after my husband died from lung cancer), Had a masectomy - one lymph node was positive, then chemotherapy then tamoxifin for 5 years and now have been on femara for 5 years I get the pins & needles, some hot flashes at night, hip soreness, and my hair is a little thinner. But, I am still here. And, my doctor has allowed me to continue on femara for another year at least............I will stay on it as long as he allows. Right now at age 65 I ballroom dance three times a week and work out at the gym with a trainer two times a week, and I am still working full time. It all keeps me strong mentally and physically. And, I pray a lot. A strong will goes a long way in keeping yourself healthy.

I have been taking Femara since January of this year, I have had the same symptoms, muscle pain, joint pain, sweats, sleepless nights etc....... I am afraid to stop taking it. What shall we all do, I feel I will never be who I was before BC.. I am not ready to stop living.

Hi all: I am an older bc patient, having been diagnosed in October 2008 at 69. Following a olumpectomy and radiati9on

Hi all: I am an older bc patient, having been diagnosed in Oct 2008 at age 69. Following a lumpectomy and radiation, I started taking Femara in February 2009. The only noticeable side effect I have had is a month or so of mild hot flashes in the beginning. However, about a month ago I started to have a noticeable change in my skin - cheeks suddenly became coarser and bumpy with many small broken capillaries. Has anyone else had a similar experience. I can think of no other obvious explanation for the sudden change. I know it is a pretty minor problem compared to muscle pain, etc - just wondering? Nellie

Hi Nellie9-- I take Femara also and find myself with thinner hair on top of my head but all in all, I feel fortunate for not having more severe side effects. I do have some others but after acute fibromyalgia, I can deal. About those cheeks of yours, it sounds like Roseacea to me. It is a cronic skin conditon that can be helped by lotion prescribed by dermotologist or your primary. There is also a new overthecounter med called Proacea or something close to that for Roseacea in the drugstore CVS for sure. It works too. I wish you luck. I had a bi-lateral mastectomy in Feb. 2008. I had a different type of cancer in each breast.......like they were in competition or something! LOL. Don't miss the boobs. I'm 61.

Willowlady, My profile pretty much matches yours. I will be 72 in March and was dx with stage 1 mucinous carcinoma, less than 1 cm, in Aug. 2009. I had a lumptectomy in Sept. 2009 with no nodal involvement. I then breezed through 6 weeks of radiation and began taking Femara a little over a month ago about the time I ended radiation. Almost from the start I've had pretty bad insomnia. Last Thursday I woke up with some of the worst pain I've had in a long time. I'm usually stiff in the morning because of mild arthritis but this was really bad pain in my neck and left shoulder. Then it moved to my chest muscles and was so bad I considered going to the ER. I don't know if that was a delayed reaction from the rads (It was on the same side as the BC) or if it was a SE of the Femara. Of course when I called my onco, she said it "couldn't" be from the Femara. I've been against taking it from the beginning, and if these SEs persist for very much longer I'm simply going to quit taking it. My mother was very crippled in her later years from osteoporosis and was confined to a wheelchair. I don't want to have the same experience if I can help it.I just can't believe that at my age and given the early stage of my cancer, I am at that much risk. I would rather have a tolerable quality of life than live 20 or more years in constant pain.

Have been on Femara for 2.5 years, had a bit of joint pain to start with,but since I already had arthritis, it was hard to differentiate what caused it. The hot flashes were a pain, but they have decreased over time. I don't have a problem with Femara and was able to get past the side effects just by being stubborn as a mule.

I was on Femara almost 2 yrs -- after 1 yr, took a 2 month holiday to see if it was zeroing my libido (yes) but went back on ... after about 18 months, realized i was forgetting things in ways that were definitely *not* the usual stuff ... hard to explain, but i felt i was in a mental fog, and was losing my ability to concentrate. Talked with my onc at 2 yrs and went off Femara -- he said, with as small a cancer as mine, he was not worried about my going off. He also suggested i go back on after a few months to be *sure* it was the Femara messing with my brain (i am in my 60s...).

I've been off almost 6 months, and i don't think i'm going back on -- unless i get a recurrence, of course. Sadly, my libido seems to have vanished permanently, even without Femara. But some joint pains that i wasn't even blaming on Femara have cleared up. AND my brain feels a lot clearer, and that's my life -- i can't teach in a fog! I see my onc next week.... i'm curious to know what he says. My suspicion is he'll urge me to go back on. But maybe not -- he is a thoughtful guy.

i have been on femara for almost 3 yrs. i have went over in my mind several times whether it is worth it or not. i do have hot flashes, joint pain, ect... and for me it has seem to get worse over time instead of better. so i was not sure if it was femara, or getting older..if i drink coffee, it is so much worse, and if i take any vitamins that have soy in it. so i have been able to narrow down some of the things that make it worse. i will stick it out the next two years, but will be so glad to be off of the femara.

I am new to this board. Have been wondering if the Femora(which I started in Feb. was the cause of all my aches and pains). Now I am convinced it is. Writing just a llttle note hurts my hand so much I couldnt even finish. I also cant sleep and sometimes its hard to get out of bed. My onc. said I could switch meds but I think I would probably have SE with any of the other drugs. Would love to be my old self again. Many hugs DAR

My Q is about the peritoneal cancer diagnosis from breast cancer. I was diag with the same last November. I had BC stage 3a in 2007 and had a bilateral mastectomy, chemo and radiation. I had been cancer free until I became constipated with fluid backup in my abdomen. At that point I was prematurely told I had peritoneal cancer (stage 4 bc) A very long story but just wanted to know your symtoms. I am now on femara with no symtoms but am told I am asymmetric. I had a PET scan an all came back clear except that I had a small bowel obstruction and a couple of gallstones. My doctor says that the cancer cells are diffused and would not show up. I feel great but have this looming thought that I should be dying. I had to change my doctor because of being so negative. (He diagnosed me and said that the treatment would be chemo 3x a month for the rest of my life which I responded that I would be getting a second opinion) the 2nd opinion turned out to be the doctor whom my doctor was a fellow for at Dana Farber 8 years.anyway he said he agreed with my doctor but instead of chemo to just take Femara.

What are your symtoms now and what is the prognosis? What are you taking now and do you feel good? (I do hope so) I am told that it is extremely rare for peritoneal cancer to spread from the breast so I am hoping you can shed some light.

Hi, I am pretty new to this whole site. I have been on Femara for over a year and have all the side effects but with my ca being hormone receptive my oc told me this should work for me and it has. I had so many tumors in my liver that there was no liver left( according to him.) My ct in Dec showed that after 4 months most of the tumors in my liver had shrunk drastically. I don't think the Femara would do any good if I weren't ER+PR+ because it is supposed to be simply a hormone blocker (as I understand it). I had to go off the Femara for about six weeks as my insurance co wouldn't pay for it. I finally got it straightened out but my oc had a fit when I went in because my liver markers had stayed down but the bone was elevated. Since I started back I have had much worse symptoms than I did before I took my break. I too have a strange sense of humor. I don't know why so many people are afraid to laugh. It helps me deal and crying makes my eyes sore.

Hello Girls, I had to have surgery for trigger finger. It developed quickly after I began Femara. But the surgery was a snap and it worked. My hair came back in over the winter and by spring I had a thicker head of curly hair. My breast is still tan from the rads and I have had to have my seroma drained a couple of times. It is starting to dissipate properly now. The left breast is noticably smaller than the healthy right breast. After six more months of healing from rads, I will be considering reconstruction and reduction surgery. I am opting for the complete removal of the ducts and nipples, I don't want to risk DCIS again, on me, it was hard to detect. Three mammos and one ultrasound and it finally showed up on self exam! In a short time, it became invasive, luckily never got to the node. I might not be so lucky again, so off with their heads!

So I just thought I'd pop in and tell you that I passed all my tumor marker tests with flying colors, my scans too, and my mammograms. I am now officially in remission for stage one! So happy with the news and now its onto living without cancer, of course you are always looking over your shoulder, but I have confidence that this journey has made me a little tougher and grateful. Praise God and Glory to the wonderful medical team I had in Buffalo, NY and all the people on this board who supported me and all my friends and family for their prayers and help, all the love from my husband and daughter, you know, it's been one hell of a ride in the cancer canoe, but my canoe is docked, and I hope it sinks and I never need it again.

I am going to do all I can with diet, exercise and stay educated and alert to keeping this disease under control. It is a part time job, isn't it? I've met lots of survivors and now, proudly, thankfully I am one of them. I will be 67 in October, on my birthday, I will eat cake and ice cream and do a bit of gambling and dancing at the local Casino.

Now just use every resource you can to complete your own journey and I hope you make it to the wellness pier!

I was diagnosed in 2004 with stage 1 bc luckly it was caught very early but I still went for the modified mastectomy just to be sure the cancer was out..nothing in the lymphs and I had 4 rounds of chemo afterwards I was put on Temoxifen for 5 years. Well, 5 years passed now I'm on Femara for another 5 years even after the mastectomy and all the chemo my doc still wants me on it! Well I was doing good and took it for about 4 months and then one day I just stopped taking them. I kept forgetting to take them, I would skip days or I would forget if I took it that day or not. I'm just so bad taking medicine on a day to day. Well, I went to get my 6 months check up and told the doc that I stopped taken Femara and she said to start taking them again. Well, about a week ago I started again on Femara and a couple of days ago I started gettting pain more like a burning feeling in my good boob. Would Femara cause this?

Oralia yes if you read the side effects that is one of them but if it persists you should speak with your doctor. The side effects from Femara come and go for me not too many but I did have that one just before my last mammo, the one I have the most is stiffness in my hands. I bought a small weekly pill box from Walgreens, it was $1 and I put the Femara in it every sunday and keep it in my handbag. I take it after lunch and as it is the only pill in there I always know if I have taken it. I also take a thyroid pill and I turn the bottle upside down so I know that I have taken that one.

I am 59 and my 1st BC was i 1993. I had a modified Masc. w/ 8 lymph nodes that were clear. Had 6 mos. of Chemo ( no bad side effects-hair loss ). Slept about 36-48 hrs after each round. Sept. 2010 my cancer metastized to my ovaries and lots of lymph nodes. Been on Femara a little over a month and no side effects to speak of. Take Mirolax for regular bowels and seems to work well. I do take some vitamins and supplements and so far all I have is "double" chemo brain. My cancer is HER+/PRO-;HER2neg. I'm hoping for good result from next test. Bone scan was clear and no other organs affected. If something is working, I try to let the good come before the bad. I will keep you all in my prayers.

I've been on Femara (generic) and the side effects are really uncomfortable. Nausea--mild. dizziness very upsetting.....tiredness......poor appetite.

I know I must maintain a sense of humor...i"m finding it difficult right now. I'm wondering how long your side effects lasted or are lasting. Mine are going on a month, with no end in sight. My stamina and energy suck. There is no choice for me but to take this type of medication. Please tell me about your side effects. Thank you..........Lois